A pandemic and fibromyalgia

” Learn from yesterday, live for today, hope for tomorrow” Albert Einstein

I apologize to my dear ‘old’ readers of the past for not writing blogs for many,many months. I do hope that some of you are still around thinking about this site and will join me once more. I have not had much energy this past year and most of you can understand the lapse. When one sometimes cannot bear to even open the computer because of crushing fatigue all fibromyalgia sufferers can relate. Such is my only excuse.

But this world wide crisis has inspired me to write about not only my own feelings but those who also have the ‘pre-existing ‘ condition of chronic fatigue and its twin fibromyalgia which increases our anxiety, pain, frustration, loneliness and fear. The questions are many but the most common : is this symptom(s) fibromyalgia or CoVid19?

It is ironic that the main symptoms of this plague are exactly those of fibromyalgia. Other than a fever I frequently have all the others that are listed . How to differentiate between what is ‘normal’ for me and what is the virus? Sore throat, runny nose, headache, muscle pain- all of us experience these on a frequent basis. The onset of a flare-up is similar to flu-like symptoms.

What is to be done? More mindfulness, frequent calming videos, exercising as much as possible in the house, going out for short walks, and if possible speaking with a therapist via phone, zoom, face time or other means. Taking up a new hobby is encouraged but if in constant pain or fatigue this often isn’t an appealing option. It is a struggle not to succumb to inertia and hopelessness.

On the more upbeat side (if that is possible!), staying home and avoiding crowds is something our bodies yearn for in ‘ordinary’ times, so it is perhaps not as difficult for us as it is for people who enjoy a more social life. But, even then if our families living with us are not calm, quiet and helpful during this crisis we may be overwhelmed with their constant presence.

I am one of the more fortunate ones. I live with a husband who is a caregiver. He is steady, comforting and not prone to catastrophic thinking. In fact, my days have been more serene. Children and friends food shopped for us in the early days. Old friends have reconnected though social media and I have felt comfort away from the somewhat rushing about days that I did before this self isolation.

Its been said by so many that the world needed this rest from all the destruction caused by human consumption, air and car travel, and consumerism. So too can our central nervous system appreciate the calm.

I am also fortunate that I am retired and I don’t have to worry about finances. My heart goes out to those who are in a dire financial state, or who live alone and unable to find resources to help make their days easier.

I was born in the polio era with children dying every day in Canada. As a teenager I trained as a nurse and we students were required to work for 2 months in a tuberculosis sanatorium, wearing masks, gloves and protective gowns, always fearful we would catch Tb. Now in my old age with heart disease and fibromyalgia which compromises my mobility I have time for reflection. It is a peculiar time of life.

May 12th, the birthday of Florence Nightingale, what would she think of this pandemic? I salute my comrades as I recall the fear I had every day working with tuberculosis patients. Have we come so far from polio , tuberculosis, and other epidemics? It is time for reflection as we wait out these days, wondering what will be done by future generations? If, as I have claimed, fibromyalgia is a form of PTSD (extreme anxiety) will even more join us in this club of ours? It is widely thought that Florence Nightingale herself suffered from fibromyalgia.

There is no part of my life, upon which I can look back without pain“, Florence Nightingale.

13 thoughts on “A pandemic and fibromyalgia

  1. Lois Roelofs

    I, too, spent time in a TB hospital during my nurses’ training in the early 60s. I remember no air conditioning and wearing those heavy cotton gowns and masks. I’ve thought of that now when I see the healthcare workers with their PPEs. Like you, I’m retired and really have no worries compared with many others who are suffering from losses of many kinds. And my fibromyalgia status has stayed the same for years. If I pace myself, I wouldn’t know if my few symptoms were simply due to aging or the fibromyalgia. Thanks for coming back to blogging. I’ve wondered where you’ve been!

  2. deidre king

    All due respect…you are a chronic adrenaline maker…hence your chronic pain and fatigue. You stated several times in this blog that your lucky you don’t have to “worry” about finances …you are overwhelmed by the presence of others…your husband is a caretaker ….he is calm and not prone to catastrophic thinking( that’s why he doesn’t have fibromyalgia) but your prone to catastrophic thinking . You have a psychiatric disorder called negativity and fear thinking which overloads your body with adrenaline and stress hormones and in turn sensitizes your nervous system . I am completely recovered from fibromyalgia once I began to understand and change my thinking. I started moveing my body to release the adrenaline I was causing while I went to psychotherapy to change my thinking. I’m like your husband now . Before I was like you . You don’t have to live with this , woe is me…but maybe on some level you like it.?? It gets you attention and caretaking . Something you need to learn to do for yourself instead of filling your mind day in and day out with negativity. I’m 100% cured of this. My husband and I go danceing every weekend. Well dureing the pandemic we dance at home . Turned out living room into a dance hall with lights and music and mirrors. Life is great. Stop the fear and get excited about life again. It really is that simple. It’s not easy to change but the solution is right in front of you and within your own power and capability of you would just believe it.

  3. Sue Shannon

    Dear Deidre
    One size does not fit all.
    I’m happy for you that you have found a solution to your problems.

  4. Sue Shannon

    Dear Barbara
    Thank you for your insights on the pandemic situation we all are in. I have wondered if the symptoms that I experience is the ‘virus’ or the usual. Since I haven’t been anywhere for weeks I’m sure it’s the usual fibro. I have discovered that I’m a natural recluse. I like being mostly alone and puttering about. I’m fortunate that I am retired and have children who help me when I need it.

    My good news is that I had a rizotomy treatment at the pain clinic in October and am now free from the pain of chronic sciatica and pain pills. Of course I still have the coming and going pain in my arms, ribs and back but have learned to cope with it.

    I’m happy you are doing well and posting again. Yes old age is a bitch, but the alternative isn’t good either. I hope all will stay safe during these difficult times.

  5. Barbara Keddy Post author

    Thanks Lois: I’ve missed you too. It was a bad year with heart problems and fatigue but things have settled down somewhat of late, no doubt due to pacing and very quiet times. My fibromyalgia flare-ups are less dramatic as I age but change of seasons does affect me especially as this spring has been extremely cold. I think that my symptoms are so much a part of me that I don’t notice them as much :-). The famous adage that old age ain’t for sissies is certainly a truism.

  6. Barbara Keddy Post author

    My dear Sue;
    How lovely to hear from you again!
    Ok now you have given me new information. I had never heard the word rizotomy and I am so happy for you. My chronic sciatica prevents me for walking very far. The ‘back doctor’ showed me on the MRI where the nerve roots were impinging and he said while my bones were wonderfully hard these nerves are all entangled and causing me the pain and lack of energy in my legs. This is now something for me to ask about. I am very happy to have heard about this. Hope I am not too old to have such a procedure. Was it done under a local or general? I will certainly research this. I have been to a pain clinic and was there for 3 months of classes and have had nerve blocks. This sounds like a miracle to me!
    You’re right old age brings on so much we hadn’t bargained for but every day I am thankful for all I have! My only sibling (sister) has MS , is much younger than I and is wheelchair bound; it breaks my heart. At least I can walk and do for myself.
    Thank you so much!

  7. Barbara Keddy Post author

    Hooray, great hearing from the UK. Like me you are probably happy we don’t have to worry about going back to work. These are such difficult times. I am hoping to live long enough to see the earth and its inhabitants at peace.Pipe dreams?
    Keep in touch,
    Kindest regards,
    Barbara

  8. Sue Shannon

    Hi Barbara
    A little more info for you. Rhizotomy (sorry for the misspelling earlier) or radiofrequency lesioning is an x-ray guided procedure where heat causes a lesion which interrupts the pain pathway in your spine. It is done with a local anaesthetic and takes about half an hour or so. I had it done at the Pain Clinic at McMaster University. They had lots of info on their website, but the clinic is closed now because of the virus.

    I am 79 and was apprehensive because I have a PhD is physiology and pharmacology and knew the risks, but after much research decided to give it a go. It has been a blessing for me. If you would like more info please let me know.

    Your website has been very useful for me in understanding the fibro. Many thanks.
    Keep safe
    Love Sue

  9. Barbara Keddy Post author

    I have a year and a half more than you in terms of age but I feel like 100 when i try to walk a distance. Being able to walk would be so amazing. I can walk for about 10 minutes then have to rest before beginning again. I am definitely going to read up on it! Thank you sooo much!
    Kindness and peace,
    Barbara

  10. Camille

    I have just found you by accident this morning looking for another post, and I’m glad I did!

    You have written and expressed so many things that are mirrored from within as I have fibromyalgia for about half my life.

    These days of the Pandemic have been stressful for so many, and my two nieces have lost loved ones to this horrific virus…as have so many others. The days of uncertainty adds to the myriad of disorders that operate under the umbrella of “fibromyalgia” — and I have other medical issues as well.

    But through this, I am learning new ways to come to terms with the pain, and with the fluctuating flares. I keep busy writing. I keep in touch with elderly shut-ins…and I offer encouragement to those who are suffering from loneliness. These are all wonderful connections for all parties concerned…and I feel I’m contributing to life overall. I love doing it!

    I will be returning to read more of your blogs. Ironically…you posted on my birthday May 13th.
    My husband and I are retired and live with our fur baby…we are on opposite sides of the coin, he is social, I am an introvert personality. So, we balance each other out.

    Thank you for your posts,
    and I’m praying for this Pandemic to be gone forever.

    Warm Regards~

  11. Barbara Keddy Post author

    Hello and how lovely to hear from you. It seems that these days hearing from those we love and even strangers is a welcome relief from the long days of reading and watching Netflix. Happy belated birthday!I think its great that you and your husband are opposites; you’re right it balances out.
    Having other medical issues like I do brings about more fear of contacting the virus so being extra careful tends to even more preoccupation with safety.
    Come back soon.
    Regards,
    Barbara

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